Let's stop telling cancer patients how to feel

Let’s Stop Telling Cancer Patients How to Feel!

I don’t know about you, but sometimes it seems to me like there are way too many people telling cancer patients how to feel, how to act, how to do cancer and yes, how to do survivor-ship too. Do you remember when you were little and afraid of the dark? Trust me. This is going somewhere.

Well, maybe you weren’t afraid of the dark, but many kids are. I vividly remember waking up one night and not being afraid of the dark, but rather being afraid of a strange and very scary formation I saw at the top of the door frame in the corner of my bedroom where the walls met the ceiling. It was caused by some combination of darkness, moonlight, shadows, architecture and my imagination of course. I remember one night after lying there afraid for as long as I could stand it, I finally mustered up the courage to bolt out of my bed and raced into my parents’ bedroom. I hesitated to bolt because I was convinced whatever that thing was would surely grab me on my way out the door.

My parents probably said something like, there’s nothing to be afraid of; it’s only your imagination. Go back to bed.

Do you ever wonder how kids feel when they are afraid and then told, there’s nothing to fear?

Talk about no validation. Just because someone tells you there’s nothing to be afraid of, it doesn’t mean you stop being afraid.

It’s sort of the same deal with cancer, emphasis on sort of. You sometimes don’t get validation for your fear, your anger or whatever you might be feeling.

After a diagnosis, often times we are told via subtle or not so subtle messages how to feel and how to act. We’re not told to go back to bed of course, but we are often told things like:

Be strong. Be brave. Stay positive. Be tough. Fight hard. Kick ass. Be a warrior. You get the idea…

Then all through treatment in addition to these suggestions for how to cope, we are told things like:

It’s only hair. It’ll grow back. You can do this. You can beat this. You’re only given what you can handle. There must be a lesson for you in this. You only have two rounds of chemo left. You’re almost done. You don’t look sick. Chemo’s not bad these days.

And if you’re lucky enough to wrap up treatment, there’s advice freely offered again, on how to feel and what to do:

Don’t look back. Move on. Find your new normal. Let go of the past. You’re a better person now (if not, why not?) What did cancer teach you? Stop trying to rewind your life. Be grateful, you’re alive aren’t you? And the stunner to me, what gift did cancer give you?

I realize some cancer patients like hearing these kinds of things, which is fine. But many of us don’t.

Regardless, what I am wondering is why is there this tendency in the first place to tell cancer patients how to feel or how to act?

I know it’s all about encouragement, but still…

Why not just allow for genuine-ness? Why not stop trying to fix or make light of things?

Aren’t there other ways to encourage?

Do we tell people with other ailments the same kinds of things?

Maybe we do, though if so, I don’t think it’s as prevalent.

Does it matter?

I say no matter what struggle a person is dealing with, whether it’s the child who wakens in the night and is afraid of the dark, or whether it’s a cancer patient facing a whole heap of unknowns, it might be a good idea to stop telling them how to feel.

Listening, validating and allowing genuine feelings to be felt might be a better option.

Then the channels are opened up for offering some truly meaningful guidance and support.

Regarding your cancer experience (or your loved one’s), do you get sick of others telling you (or them) how to feel and what to do?

No matter where you are in your cancer experience, do you ever feel pressured to feel and/or act a certain way?

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Let's stop telling cancer patients how to feel
Yes, Let’s!

 

 

42 thoughts on “Let’s Stop Telling Cancer Patients How to Feel!

  1. Hi Nancy…Great post and so relevant.

    I am two years post breast cancer diagnosis and have pretty much QUITE telling my family members about my feelings and concerns about cancer. I get nothing but platitudes or questions/stares as to why I am still talking about my cancer issues. They just don’t get it that those issues are now part of me. I do feel safe with my therapist and support group. But I find it sad that the people who are supposed to love us the most expect us to be “over it”.
    I am learning every day what not to say to cancer patients. And don’t get me started on all those cutesy tv adds and endorsements by those who have not walked this road. Wow, your post has really spoken to me…thanks much.

    1. Mary Ellen, The platitudes do get old don’t they? I’m glad you feel safe with your therapist and support group. It’s important to have a place or a person to turn to. I’m glad my post spoke to you. Thank you for letting me know that it did. Wishing you all the best.

    2. Mary Ellen.. I so feel you girl. The it’s time to move forward peeves me.. because I have been trying to move forward since Day one… Thanks for your reply.

  2. Nancy,
    Yes, everyone seems to have some sort of advice on how we should feel or how we should think about our cancer. The most frustrating for me is, “be thankful you are alive” and “just put it behind you and live life to the fullest.”
    I think people with depression get similar advice.
    Thanks for continuing to validate that our feelings are our feelings, not others feelings. The best advice is to just be supportive and loving, regardless of the illness.

    1. Deborah, Yes, the advice keeps rolling in and you’re probably right about people with depression getting similar advice. Probably people with all illnesses get all kinds of advice, some of it helpful and some of it not, but it doesn’t seem to be as prevalent as it is with cancer. Your last sentence says it all. Thank you.

  3. I made the decision to avoid chemo, am not doing radiation, and will not do AIs. In addition to the platitudes already described, there is also, “Just do what the doctors say and you’ll be fine.” I am not sure cancer ever reaches “fine,” but it’s a cheerful thought for some!

    1. Maggie, I bet you get lots of ‘advice’ about your decisions. And yes, that ‘you’ll be fine’ comment is one that’s heard a lot. Well-meaning for sure, but still… Thank you for reading and sharing.

    2. Good for you in making your own decision on not doing chemo and radiation. It’s a tough decision to make. I’m going through chemo (again) for a second breast cancer recurrence to my chest wall. No end dates for chemo…not liking that. I am ready to call it break time on the chemo. November will be a year. Will wait to see what scans this month say. But already have talked to my doctors that I do not plan on staying on chemo forever…or that much longer. If I die from cancer, do be it. I don’t want to be the many that die from its treatments side effects and complications. Bravo to you girl.

  4. Nancy, I’ve had people try to change my feelings and suggest I do not know how to do survivorship — just recently I had an argument with a close friend about this topic. I’ve realized it’s OK to walk away and to ignore these comments. One of the reasons I started blogging was to find a community of people who get it. Validation is important to me. I can no longer reach out to many of the people I know about my current circumstances — but there are still a few of them who continue to provide their support and understanding.

    I believe that unless people have had the cancer experience (or have been a caregiver), they don’t fully understand the complexity of being a cancer patient. They honestly have no clue so I quit getting upset or arguing about their expectations of me. I am entitled to do my cancer my own way. Maybe these people want to use me as some sort of inspiration. They want to image that they would be able to do life better than I am if they faced the same circumstances.

    1. Rebecca, I’m sorry you’ve had arguments with friends about this topic. That’s sad and yes, it is okay to walk away. Validation is so important and it’s probably a big reason why most of us blog and read blogs. I don’t really think it’s necessarily true that people must experience cancer to understand, in fact, I have a post coming at some point about that, but then again… you might be right. Regardless you are entitled to do your cancer in your way. Everyone with cancer is. Sometimes all the advice about how we’re supposed to feel just grates on my nerves, hence posts like this one. Thank you for reading and sharing.

    2. Rebecca your sentiments are my sentiments exactly! Wow I’m sitting here reading all these comments shaking my head yes.. she understands!

  5. Hello Nancy,

    I have thought many of these same thoughts. “Just stay positive” is one I get even from strangers. Like your other correspondent, I loathe cliches, cant, platitudes, and rote responses. Like you, I want to feel validated. I don’t want to have to measure up to others’ expectations. I can’t, anyway. This week a person told me “I’m glad you’re feeling reasonably well”. If she only knew how much energy it takes just to get dressed or to eat! But the healthy ones cannot understand where we are and the challenges we face, even if we tell them.

    So now, I tell my journal what I am feeling. I think it is vital to become aware of and acknowledge what we are feeling. I think it is vital to growth and healing. Another thing I hear a lot is “You’re always so positive.” That’s a pretty heavy burden to heft around. Like you say, why can’t we just be real? One friend who has not had cancer still understands that there are challenges and says, “I’m sorry you’ve had to go through this hard time.” That acknowledges and validates my experience and somehow comforts me. Another says, “you’ve been through a lot, ” and that, too, consoles me.

    But it’s the ones who tell me what to do that really upset me. I would do what they think I should do if I had the strength, but, so far, I do not. So I do the things I can do that bring me joy. And I am developing my “No” muscle. Thank God for support groups. They have been a real life line for me.

    Thank you, Nancy, for articulating what many of us feel. It is so good to come to a place where we are understood and valued for who we are. We can just “be” without the pressure to perform.

    As usual, you are right on.
    Honey Bee

    1. Honey Bee, Thank you for sharing your insights which are so eloquently and clearly stated. I’m glad you have support groups you like and good for you for developing your ‘no’ muscle! Thank you for reading and for your kind words. They mean so much.

  6. Interesting

    I am a cancer supporter – my wife – breast cancer 2 ops – 4 lots of horrible chemo – all good now

    We had all sorts of interesting reactions from friends – from no interaction (scared to make the phone call) to queuing up to accompany my wife to chemo.

    During all this I went to my the airport for business to pick someone up.

    A couple arrived with their gorgeous teenage daughter – it was summer – she had the chemo scarf on her head – and a pic line hanging out of her arm below her tee shirt.

    I ran into her mum and simply said I have some idea what you are going through, my wife is also in the middle of it, and I hope it goes well

    She gently touched my arm, and said “thank you” – tears welling in her eyes

    I hope I felt I was supporting her

    Alan

    1. Alan, I’m glad your wife is doing well now. Thank you for sharing your airport story. I think you said the perfect thing to that mom and I’m sure she felt supported. Thanks again.

  7. Oh my word Ms. Nancy.. these were my thoughts exactly. As a matter of fact, we were discussing a tad something like this at a support group the other night. Why is it that people who have no idea what we are going through especially dealing with a diagnosis of breast cancer, tell me all those things you shared. I think the one that bothered me the most was You are so strong, and inside I was a basket case. You are my inspiration, why because I removed a boob that was infected? Anyways.. I am struggling with the survivor ship boat and I look forward to more wisdom reading. Thank you

  8. My husband and I were just discussing this tonight as I was balled up crying. He told me I need to find a way to get over this. I am NED and finishing up treatments of Herceptin on 9/11. How do you just move on when you look in the mirror and although you do have hair, it’s not your choice to have it so short and then you look down and see that body parts are missing. The only bump on my chest is my port. My toes and fingertips are still numb. But , yeah, I need to move on. I would love to! Someone tell me how!

    1. Maria, I’m sorry you’ve been struggling. Who wouldn’t be? My advice is to differentiate between moving on and moving forward. You might find my post with that title to be helpful. I cannot forget and move on. I cannot just get over it. But I can and definitely want to move forward. Tiny steps. That’s how you do it, Maria. At your own pace and in your own time. And finding support is very helpful, as is communicating honest feelings with loved ones. They can’t understand if we don’t share with them. Thank you for sharing. I wish you all the best.

  9. Hi Nancy,

    Oh boy, did this hit a hot button for me. Because throughout treatment and survivorship, many people have told me how to feel. Especially the “you don’t get more than you can handle” crapola. To all the people who told me this, I can honestly say, cancer was more than I could handle. I hate the platitudes, many of which you’ve mentioned. Now, as a survivor, I go to the online community for validation as well as a therapist because most of the people I know think I should be “over it.” I’ve told people how profoundly cancer has affected me, but it’s on deaf ears. Everyone has expected me to return to “normal,” whatever that vague word means.

    Great post about an important topic!

    1. Beth, The platitudes can be unhelpful, often hurtful and potentially even harmful. I’m glad you have found validation online, as have many of us, including me. I do think it’s our responsibility to share our genuine feelings with our loved ones. Otherwise how can we expect them to understand? At the same time, I know doing this can be exhausting sometimes. Guess we have to pick and choose which people we want to share these things with. Thank you for reading and commenting too.

  10. Hello Nancy,
    Thank you for voicing what many of us feel. It is difficult enough to deal with what the cancer and the treatments have imposed on us and the challenges it has created in other areas.
    You ask the right questions… why people try to superimpose their views instead of listening to our needs. I am working on not getting angry about it but it is very hard.
    My question now is – how do we tell our family & friends how we feel about this without offending them (my family’s reaction)?

    Thank you again.

    1. Isabel, Thank you for the kind words. It is hard to share your genuine feelings sometimes, but still, I encourage you to communicate them with your loved ones. Loved ones cannot read our minds and I do think most are trying to understand about the things we go through. And when someone says something that you find unhelpful, hurtful or offensive even, I think it’s fine to let them know. You can say thank you, but also mention that you don’t find that phrase, or whatever it is, helpful. Depending on the person and situation of course and as is often the case, sharing how we really feel can be easier said than done. But usually it’s worth the effort. Thank you for sharing here.

  11. What an amazing post and excellent comments. Having what my med onc calls a “defensive” prognosis (and others might call grim) after enduring chemotherapy, mastectomy and radiation treatment, I am so disappointed that both the love of my life, my husband of 40 years, and my office partner, a kind, highly experienced psychiatrist, have chastised me to “stay positive”; “you’ve beaten it”, and certainly don’t talk about the statistic that 32% of patients with Stages 1,2, and 3 of my type of cancer (triple negative, with significant residual disease after neoadjuvant chemotherapy) -and I’m Stage 3, so it would make sense that that number is worse for me- will be dead 2 years after surgery.
    Just 2 days ago I was putting together my reports to send to another institution in regard to a second opinion regarding surveillance and possible admission to a trial, and came across the notes I had written during my med onc visit reviewing my profoundly disappointing pathology report and its prognostic significance. I was awash in a fresh wave of grief when my husband came home and told me to “quit obsessing about the cancer” – and, “”what’s for dinner; what did you do all day?” How much more helpful it would have been for him to put his arms around me, say how tough it was for me to see these notes made on one of the worst days of my life, and how, no matter what happens, he would be there for me. I did inform him of that the next day, and asked him if he wanted me to shut off from him my inner world where thoughts of my breast cancer lurk, and he adamantly said no. So maybe the next time, and it’s every few weeks or so, I am seemingly disconsolate about what I am enduring, he will provide comfort and support that is of benefit.
    He may disagree but I AM moving forward (yes, another outstanding post) which includes controlling the controllable, and that means seeking the second opinion (with my med Onc’s full support, btw) that may be life-saving.
    Thank you so much for your blog, Nancy. It has made an immeasurable difference in my life and I am grateful.

    1. Lain, Thank you so much for your insightful comments. Thinking about and talking about our cancer does not mean we are obsessing about it. And I don’t blame you for being annoyed with those just stay positive statements. Those can be so unhelpful and as I mentioned, hurtful and potentially even harmful. I’m glad you are getting that second opinion if that’s what you want to do. I’m also glad you shared your feelings with you husband and I’m happy to hear he intends to be supportive. I’m sure it’s very hard for him at times, too, so hopefully you guys can move forward together. Good luck with everything. Keep us posted. And thank you for the kind words. They mean a lot.

  12. One of the things I’ve become more aware of in the past few years is this tendency to give unwanted advice. Sure, it seems cancer patients get quite a lot, but it likely happens on a larger scale. People are always pushing their new diet or exercise regime on others. And don’t forget, Ehrenreich wrote a whole book about the “be positive” mandate and breast cancer was only one chapter! I guess most folks mean well, but at times I cannot help thinking, ugh mind your own beeswax! Let me eat/do/feel what I want!

    1. CC, There is a lot of advice handed out to cancer patients that’s for sure. I read and appreciated Barbara Ehrenreich’s book, although I wish she would have devoted more than one chapter to cancer. You’re right, most folks do mean well, but still… Thanks for sharing some thoughts.

  13. I’m finished with chemo and am now on Femara. I still have the panic attack-fear that it will come back. I worry that the pains in my legs are metastatic. I’m sure that it is from the Femara but still, how do I truly know. I’m not the same. I’ve changed and people still expect me to be the way I was. I’ve have to learn to say no. Because I don’t have the energy to do all I used to. I wonder when I will get used to the new me.

    1. Susan, It’s an ongoing process. One step, one day at a time. So cliche, but so important. And communicating with your loved ones about how you truly feel really helps. Otherwise how will they know? You are changed and it’s common to not have the energy you once did. Be kind and patient with yourself and do the best you can. Thank you for sharing.

  14. I have read lots of articles like these of late. I think they are causing people to be afraid to speak with each other in case offense should be taken. I think one thing we have to remember as fighters that people “LOVE” us and they are just as scared, mad, confused as we are. How blessed is that, they fight with us, no one fights alone or they shouldn’t. I love hearing survivors stories because they give me hope. I want to hear how they changed their live styles to help their body fight the disease. I love to hear that people care about me, sure not always saying the right thing, but that is so much better than silence isn’t it?

    1. Di, I think we all love to hear that people care about us and I certainly agree that we don’t need to make people feel afraid to speak to us in case they might offend us. That’s not my point at all. Put pushing platitudes and the just stay positive mantra just isn’t helpful for many of us and I think it’s fine for us to express how those kinds of things make us feel. Thank you for sharing your thoughts.

  15. I am 10 years out now, from Stage IIb triple negative breast cancer. I had a left mastectomy, with tram-flap reconstruction, then chemo. The surgery was painful, the chemo had too many side-effects to list (seriously, I had to list them since I was on a study). It caused a lot of depression and pain as well as the standard hair loss, fingernail fungus and loss, skin sensitivity, cracking and bleeding…etc, etc. To get anti-depressants I had to go to a new counselor who could prescribe (not my own who actually was a breast cancer survivor…I hate that term). The new woman did not understand how I felt. I went in with gray skin, eyes tearing up from the chemo, unable to stand upright from the pain from the surgery, barely able to use my fingers because of the pain, afraid of crowds because I did not want to get exposed to germs…and a pariah at work. Friends were afraid of me. Her advice? “Stay positive”. “Take a walk in the park with a colorful parasol with my head held high”. I wanted to shove that parasol up her ass. I don’t remember her name, but I call her the “parasol lady” to this day. I had numerous people tell me to “stay positive” as if my life depended on it. As if the chemo would not work and I would die if I did not. I hurt so much that I could not be positive, and I felt so guilty. Luckily I found a book that said that a study found that it made no difference what attitude you had as long as you were able to vent your feelings to someone. My regular counselor helped with that. The “christians” were the other issue. I was yelled at for not having some big awakening because of my cancer. What did I learn from it? They thought I should do something that they wanted me to do. I did learn something. I learned to take one day at a time. I used to be a “what if” person. Because time slows down when you go thru something so awful, I learned to stop imagining things way in the future that had not happened yet. I guess if there is one thing that I can count as good, that would be it. I can reign in the imagination and fear of the things that have not happened yet. The fear of cancer has dimmed with time. It is still there, but instead of next to me, it is like it is behind a very thick wall. It knocks loudly at anniversary times when I have to have yearly MRI’s. I did find out that I am BRCA1 three years after my cancer when my mom got ovarian cancer and died. I had a full hysterectomy then. I think about getting a right mastectomy but am not ready yet. Maybe one of these days when the 50% chance of a new cancer scares me more than the surgery does.

    1. Marla, Thank you for sharing so openly about your experience and for sharing your thoughts on the just stay positive advice that seems so prevalent. I’m sorry to hear about your mom; that’s so sad. I’m glad to hear that your fear has dimmed with time. I certainly wish you all the best.

  16. I absolutely LOATHE all the platitudes you mentioned, and probably more. People seem to think that once you finish treatment, you’re done and you should feel nothing but gratitude and get back to life as it had been. As if it were possible. Finishing treatment means you now begin Part 2 of the continuing cancer story. The road back is so long, I don’t know that there’s an actual finish line, yet others can’t seem to fathom the damage we deal with. Connecting with others who are in it is so validating. Thanks, Nancy, for all you do to make that happen.

    1. Eileen, I am very weary of the many platitudes and the constant pressure to above all else, just stay positive. I think you’re right about part 2 perhaps lacking a finish line and yes, cancer or no cancer, validation is so important. Thank you for sharing, Eileen.

  17. In the last 3 yrs I’ve gone through 8 major surgeries 2 years of chemo 1 yr of anti body infusions, which will continue the rest of my life. I’m terminal and cancer has spread to other parts of the body…. After reading this article I didn’t feel alone anymore… I was at a point of death would be better as I can’t live up to the expectations people are putting on me and the total lack of respect for my feelings. I read this and wept and now feel like someone understands… Thank you

    1. Sam, I am so glad you read my post then. Never feel that you must live up to the expectations of others. And no, you most certainly are not alone and many of us do understand. You’ve been through and continue to go through a lot. Be kind and patient with yourself. Thank you for sharing. I am very moved by your words.

      1. Thank you so much. I feel as if a weight has been lifted. I know I can’t change others points of view, but I can now feel good about my own..

  18. I have enjoyed reading the post and your blog. I experienced being reduced to a puddle of tears in a session with a well meaning “therapist” by being told how I should feel and what I should say to myself when I wake up in the morning. I was just not to that point yet, nor do I think I am yet. As hard as I try, I am having so many fears about the chemo. I am triple negative breast cancer. Wow, I just described myself as a form of cancer. I never would have thought I would do that. I just ordered your book and am looking forward to your next one already. Thanks for blogging and being honest. I feel I have to say certain things that others want me to say. It makes others so uncomfortable to talk about cancer, illness or death. Dealing with loss is the hardest thing for me. I have lost my health, job, my co-workers, patients, and my Mom died last year. I was a nurse, now I am not sure I’ll be a nurse again. Not only did I find out about my cancer this year, 8 weeks before my lumpectomy, I had to have a pacemaker and defib. placed due to cardiomyopathy. It is so overwhelming. Thanks for letting me have a place to vent.

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